701: “How do I care for my ill and grieving mom when I am stretched so thin myself?”

111 thoughts on “701: “How do I care for my ill and grieving mom when I am stretched so thin myself?””

1. She’s foggy, depressed, in pain, and discouraged, so, yeah, it’s unlikely that she’ll have a list of tasks all ready to go.

   Never underestimate the value of presenting limited choices to someone. I understand you are having issues getting all your meals prepared. Would you like to work together to make up some prepared things today that you can eat this week or would you like me to look into a premade meal delivery service? I know you’re having a hard time getting everything cleaned. Would you like me to plan on spending some time helping you with that every other Sunday or should we talk about hiring a weekly service?

   Maybe if mom has control issues she’ll come back with some third option, and it might be something you need the Captain’s “not gonna happen” script for, or maybe it’ll be something workable and that’s great too. If she just flat-out rejects it you can gently counter that whatever she wants to do is fine, but it seems to you like she’s not happy with X and perhaps one of these things would help.

   It’s hard to force these conversations sometimes, but in my experience it’s way harder to deal with what comes along with avoiding them.

   1. As someone who is often in pain and/or foggy from meds, an enthusiastic YES to limited options. If I already can’t think, giving me lots of options to pick from won’t help. But I can usually manage to decide between two or 3.

   2. SO. MUCH. YES. Limited options make life much easier for both people who are all out of spoons to give and people with control issues, who are often wondering, “hmm, yes, but is that the BEST POSSIBLE OPTION?!” Being firm and going, no, these are the options, which one do you like? might get you further than going “so what do you want?”

   3. Great suggestion. I will definitely try to keep that in mind when I’m offering to help with things.

   4. I loooooooove limited options. YES give me 2-5 choices. So much easier than infinity.

2. So many hugs OP, I have been having a lot of conversations with my mother along those lines as she’s becoming more of a caregiver for my father who’s dealing with increasing dementia. A few months ago when my parents health seemed to be in a stable place, but my mother’s sister was going through some very serious mental health issues – my mother brought up the idea of bring my aunt from out of state to live with her. As my mother is in her 60’s herself, my brother and I were terrified by this idea as ultimately burning my mother out. So we put together a list of things to immediately help out (laundry, cooking, cleaning, landscaping, etc.), and then larger lifts that might not be apparent immediately, as well as self-care ideas. While ultimately my aunt never moved in, as issues with my father go up and down, – it’s a list we return to in regards to what would it mean to have more frequent cleaning services? hiring a housekeeper? using a laundry service? and so on.

   It’s definitely been a process, but breaking down these kinds of services that are available (while obviously dependent on income level/social service access) often seems less daunting than “get more help”. Also, when I was a child when my father was ill at the time, some friends of my mother “gifted” her with the services of a housekeeper. That housekeeper was a lifesaver – but my mother herself would have never agreed to the process of hiring someone for such a job. So offering to gift a cleaning service or laundry service might be a way to introduce that kind of help initially as a gift rather than something else to arrange and coordinate.

3. visits are filled with her lamenting that she doesn’t have anyone to help, and my offers of help are turned down more often than not because they aren’t the right ‘kind’ of help (she has rigid parameters and a deep need for control).

   LW, you are going to have a tough time of things at first, I’m afraid. My grandparents lived in their home almost until the end, but the last ten years were extremely challenging. They fought giving up their car, even though they were both legally blind. They refused meals-on-wheels every time they came by to deliver for a month. They wouldn’t even open the door for a maid service. Eventually, my father forced them to accept a live-in caregiver during the week with family members covering weekends. The first caregiver lasted six months before quitting in pure frustration. The second one lasted longer, but in part because my grandfather had to be moved into an Alzheimer’s care facility.

   I’m not saying this to discourage you, only to help you prepare for what’s coming. Odds are, your first offer of outside help, whatever it is, will be refused. Anything that isn’t directly tied to you will, on the first round, be either openly rejected or passively neglected, whether it’s meals-on-wheels or a Netflix subscription or audio-books or signing them up for a class at the senior center. Do not give up, do not give in. The message they’re trying to send is “please stop trying to get other people to help me”, and the reply you need to send is “I will not stop until you are getting help of one kind or another”.

   When they do finally accept a part-time caregiver or a meal service or a cleaning service, they will feel better and be doing better, and getting them to acknowledge the feeling/better doing better is a healthy thing. Do not try to get them to acknowledge that they’re feeling/doing better because of the help, and don’t expect them to thank you for arranging it. The reward you get is a happier, healthier parent, with less worry for you, and that’s not insignificant. The first round is the hardest; once they can accept help, it gets easier.

   I don’t know your location, LW, but in the U.S., many states have a Department of Health and Human Services, with a subsection for Seniors. Even if everyone is well-off financially, the department may have access to information about products and services, including service providers that are vetted to some degree or another. Dealing with bureaucracies can be a time-sink, so you’ll have to go at your own pace, but they can be a part of the solution.

   1. Oh yes. Grandma was very opposed to the idea of a nurse or cleaning person coming in to help out, but it was getting bad enough that it was either that or a nursing home. My favorite aunt was the one who had to navigate this one, and there was a lot of anguish about where to draw the line about Grandma’s autonomy vs. the fact that not having someone looking after her would have been neglect.

      1. I think phrasing it as “autonomy vs. neglect” is really valuable, because children/caregivers do not always have enough distance/perspective to realize the extent to which their loved one has declined.

   2. This is spot on. My own step-grandmother, who is in her mid 90s now and not as mentally with it these days, was extremely resistant to receiving any sort of help. She refused meals on wheels services, maid services, or even help from family. She became very angry when she felt that someone thought she was less than 100% capable. I think it was especially difficult for her because she has always been an extremely intelligent, competent, independent person. It finally got to the point where she was in danger living alone, and my family was able to get her assessed by a doctor and forced into a quality nursing home. The transition was a traumatic experience for her, but she adjusted very quickly and is now doing better than she has in years. She’s definitely not grateful, nor does she see that move as any sort of cause of her increased happiness and health now, but it doesn’t matter – she’s happy and safe where she is now.

      Obviously this is more extreme than LW’s mother’s situation – I’m sure she doesn’t need to move to a nursing home! – but I wouldn’t be surprised if she reacts similarly to the way my step-gran did and the way RodeoBob’s grandparents did. Best of luck to you LW, and I’m so sorry for your loss.

4. Oh LW, I am sorry – both for your and your family’s loss, and for the pain and strain that you are all going through now. It is not easy at all to provide caregiving to a parent, especially during a transition phase like this.

   You don’t mention how old your mom is, but if she happens to be on a more elderly side, there are probably other support services in the area that you might be able to take advantage of. The Administration on Aging (http://www.aoa.gov/) helps provide funding through state and regional-level programs that are designed to help seniors with things that become more challenging over time. There are also private caregiving and support services that can help with things from light tasks, shopping, cooking, etc. to just basic companionship – one example is a company (nationwide franchise) called Home Instead; YMMB on your particular area.

   Good luck to you.

5. Her need for control and resistance to outside help might wear down slowly in the face of convenience and improved quality of life from actually receiving help.

   This was certainly true for my mom. She needed help cleaning her home; she (like so many of us) was socialized to think it’s A Woman’s Job to Keep Her Home Clean and foisting it off on somebody else is Just Lazy. One day I said to her: “Don’t think of it as your being lazy, think of it as Economic Stimulus! Be a job creator!” This tickled her entirely. She promptly hired a local woman to come in once a month, who became a delightful source of neighborhood gossip, and of whom she became very fond.

   Best wishes to you, LW!

   1. Your reframe was awesome and I’m glad to hear it worked!

6. LW, I am so sorry for your loss. I’m seconding Don Whiteside’s recommendation for presenting limited options. Doing it naturally, without hesitation, can be a really effective way to manage the kneejerk NOPE when something isn’t exactly the way they wanted. It might feel a little bit manipulative and underhanded at first, but you are coming at this from a genuine desire to get your mother the help she needs in a way that protects yourself – not as a power game/control strategy. If it works, you BOTH win.

   So many jedihugs if you want them.

7. Oh LW, ::hugs::

   I am in a somewhat similar situation – my mother passed away, and I live too far from my father to visit regularly or help him with the various care he needs. He just turned 80, and while he’s still thankfully very independent, there are still a lot of things he needs that I can’t provide for many varied reasons.

   Therapy has been a huge, huge help for this – particularly for separating “Does Dad really need that?” from “Do *I* think Dad really needs that?” (That may not be an issue for you, but for me, it was huge. My guilt at not being able to be there and fix everything turned a lot of things that were actually quite small into things that felt SO ENORMOUS and that caused me a ton of anxiety.)

   And, if you are able to get your mom to agree to try it, hiring a cleaner is a wonderful, wonderful thing. Dad is not a housekeeper. Mom wasn’t much of one, but at least she tried; since she passed away, Dad’s house has been …. yikes. He was very skeptical of hiring a cleaner, because he likes his Stuff, but we (my sister and I) convinced him to give it a try if we paid for it, and in the end he was THRILLED and actually asked them to come back on his own. That may not end up being the case, but he felt much better in the house once it was cleaned, and my sister and I ALSO felt way better about him being in the house once that was done.

   But regardless of everything else – more ::hugs:: Please be kind to yourself. This is such a tough thing to go through, and if you can’t do everything your mom needs, or everything you wish you could, that is truly okay.

   1. This is exactly what happened with my Dad re getting a cleaner. It took two years to persuade him and he only did it because the gift vouchers we gave him for it were going to expire. And we had to break ‘cleaning’ into much smaller parts like ‘get someone to come and do the windows’. Of course the minute the cleaner finished, he realised and a regular visit was organised for the whole house. I think he just…never really saw how gross the house was. And he got a lady friend…!

8. I just want to say: LW, thank you for this letter, and Jennifer, thank you for your response. I have a mother with chronic health issues that I struggle with how to address, and anticipating the future as she ages fills me with dread. This letter and response highlight so many constructive ideas about how to help, and suggestions and tools for providing help, without being subsumed and consumed by helping and familial obligation! Thank you, thank you, thank you.

9. I have no good suggestions, but tons of sympathy.

   Spouse is the only local relation for his aging grandparents. I am getting lots of pressure to be their caretaker from his mother (because female), who is the oldest daughter, and is getting pressure to move back here from the rest of the family (because female).

   The grandparents are adamant that no help is needed, please leave us alone, we’ll let you know when that time comes. Their home is not maintained to the point that they lack a safe supply of potable water, but they refuse outside assistance.
   Especially from me, who they are not really comfortable with in that way. It took the better part of a decade to get to ‘come inside our home and eat dinner instead of handing a bag of presents for the grandkids through the door with the engine running’ levels of comfort.

10. So many empathy hugs LW. I’ve been going through the same sort of thing with my dad since mom died unexpectedly. I also am an only child.

    I wonder if there isn’t some way to arrange for some company for her or convince her to join a support group? My dad spends much of his time in an online group for people with his condition and meets them in person after a while. Having someone who knows your particular struggles is often very helpful.

11. I am the adult only child of a disabled parent (who lives in a different state with my other parent who is relatively healthy and is their primary caregiver but neither of them are getting any younger) and the parent of an adult disabled offspring who lives with me. There’s been a lot of great stuff so far and I’ll be keeping an eye on this as more comes in because I feel like I have a good handle on things or as well as one ever can but more and different ideas and perspectives are super valuable for me.

    I have almost the ideal relationship with all parties involved so pretty much the only boundary setting I’ve had to do has been internal and, let me tell you, even when mom and dad are happily making plans on their own to bring in home healthcare and cleaners etc, I STILL felt guilty and had to deal with my own in-my-head asshole demons. It was even harder with my kid. I mean, how do you prioritize your healthy self over your hurting kid? I did a lot of the stuff mentioned above, especially enlisting Team Me but what really did it was this:

    I told myself, over and over again, “If I don’t take care of myself, I will not be able to take care of them.” as many times as I needed it until it sunk in. Every time I went out for a run. Every time I took a bath. Every time I sat down to read a book, eat a meal, meditate, have a drink with a friend, take a nap. Every time I went to bed at a reasonable hour. Every time. And for the first weeks and months when everything was going down and we were realizing that there was something very wrong it was HARD. It wasn’t the hardest part of the process but goddamn if it wasn’t up there. (For me. I don’t pretend to know what my kid was going through or compare our experiences with it in any way.)

    I guess what I’m saying is: Even in a best-case version of this scenario, it’s hard so be gentle and forgiving with yourself. That mantra was super helpful for me. Take it if you need it. Disregard if you don’t. I hope it all goes well.

    1. This.
       My sister is on the Autism spectrum and will likely be in my partial care one day. My husband has Tourettes, as well as depression and a few other issues, and will likely need a wheelchair in the future due to knee injuries. My mother is… an entirely different can of worms but will absolutely need care if my father dies, and dad has semi-frequent seizures leading to him not being able to drive for six months at a time… all this leaves me in the Primary Capable Adult role more often than I’d like.

       The third bout of ‘Dad can’t drive, you’ll have to take us to do all our chores every weekend for six months’ that occured, it finally sunk in that, actually, this isn’t a long term solution and I just don’t have the damn energy to look after two families and work full time. I stopped feeling selfish about stealing time for myself. My mantra, when in a caretaking role, is certainly, ‘If I don’t look after myself, I can’t look after them’, with the occasional rueful, ‘and ain’t nobody around coming to my rescue, so I gotta be my own damn superhero’. (I have a cape. It helps.)

       You know you have limits. Superman has limits, too. Abiding by them, building boundaries around them, is not selfishness, it’s a safety feature. If you ignore those limits too many times, you’ll burn out and then there’s our down and out hero as well as the problems the hero was stoically taking care of.

       Stick to your limits, take without question the most basic of your needs (that INCLUDES ‘trivial’ things like needing an icecream, or needing to play an mmo for three hours on saturday because this week has been a turd) and then, THEN take some more after that. Give yourself a buffer. Recharge yourself fully. This not only helps you but makes you a more capable caretaker, which makes it anti-selfish if you ask me.

       Lastly, LW, I’m so sorry you’re going through this. Please be kind and gentle with yourself.

12. I don’t know if it’a applicable, but one possible solution for groceries is a store that does deliveries. Stop & Shop has a service called Peapod, in which you can go online, choose groceries, and a date for them to be delivered. If not Peapod, maybe another local store has a service like it that you could set up with your Mom, so she gets regular food with minimum effort.

    1. I love Peapod! My mom has been hesitant to use it, because she’s still not clear on how it works and the idea of figuring out how to use it exhausts and overwhelms her, but the other day I told her that she could just email me a list of what she needs, when she needs it, and I’ll place the order. She had to kind of mull it over but decided that could be helpful. I hope she takes me up on it.

    2. We only recently got any supermarket that delivers groceries in New Zealand and the fee is $15.75 unless you spend about as much as my monthly grocery budget but when I need a lot of heavy stuff it’s the best thing ever. (Especially since occasionally they’ll toss in some random free stuff. Surprise!crackers are pretty cool.)

    3. Grocery delivery saves our asses on a regular basis. If I’m in a fatigue flare, it means the difference between ordering takeout twice a day and actually eating something reasonable and not super expensive. It also means someone ELSE is carrying all those groceries (including the 25# of dog food and the 40# of cat litter and the cases of soda!) up the flight of stairs into the house.

    4. And if you’re in Quebec, PA delivers for $1 if you spend $50, and they do phone orders (and they have EVERYTHING)

13. “visits are filled with her lamenting that she doesn’t have anyone to help, and my offers of help are turned down more often than not because they aren’t the right ‘kind’ of help”

    I know the words to that song, LW.

    I had the same round-in-circles “here’s help / no / nobody will help me!” conversations with my grandmother when she was moving out of the house she and my grandfather had shared. At the time I was both frustrated (“Let me help!”) and hurt (“Why is my help not good enough for you?”) and I…reacted poorly.

    In retrospect, I think that she wasn’t looking for a better granddaughter, she was looking for Superman to come fly backwards around the world. Any help that wasn’t giving her that old life back wasn’t adequate, it just came out in weird-ass arguments about artwork and lifting boxes.

    My point, I think: keep in mind that you and your offers are good! She already had a tricky personality to navigate, and it’s extra tough right now. Remember you’re awesome – and hang in there.

    1. This sounds so spot on to me. Sometimes when life sucks, people (and I’ve done this before) won’t accept anything less than UNFUCK THIS SITUATION AND MAKE IT NOT HAVE HAPPENED. Anything that doesn’t totally eliminate the problem is labeled useless, because the problem is *there* and *it* is the source of the trouble. Unfortunately, the problem of someone dying just *can’t* be fixed. So it feels like nothing helps at all.

       Keep trying. This will pass and give way to more agreeableness on part of your mother, I expect, once the initial shock and resistance to the situation are fading.

       1. Yep. No doubt there is and will be a lot of good, or at least well-meaning, advice here but – speaking as one who’s been in this situation a couple of times – the fact is that you’re going to end up just muddling through a lot of the time. If you can accept that, rather than beating yourself up for not coming up with The Solution, it will be the single most helpful move on your part to keeping your sanity.

          1. Thank all of you for these comments. I’ve been caring for (/trying to care for) my mother (stage 4 cancer, depression, serious personality issues) since August. I’m a problem-solver/helper person – it’s what I teach, it’s what I do, it’s who I am – as is my spouse, and it has been so hard to handle the fact that whatever we do to help my mom (when she accepts it), it’s never enough and it’s never right. It’s just really been horrible, no matter how hard I try to follow the kinds of good advice shared here. But, on Mother’s Day, whenever my mother complains, no matter what she says, I am going to deliberately hear ‘UNFUCK THIS SITUATION AND MAKE IT NOT HAVE HAPPENED.’ And that is going to refocus my compassion and patience, while at the same time reminding me that logically, I really cannot expect myself to fly backwards around the world like Superman and fix things. Thank you.

    2. That is really, really helpful. Thank you. I need to remember this.

14. My mother is in a similar position (in a nursing home currently, with slight possibility of returning home) and I cannot emphasize a regular schedule enough. It makes life easier for me because I know what my obligations are and I can plan ahead, and it makes life easier for her because she doesn’t have to worry about when my next visit or call is happening, which means she doesn’t need to call at random (although she sometimes still does) and I don’t need to pick up each time she does (although I usually do). Predictability has been a real boon.

    I also agree about finding fun things to do together. I do my mother’s nails almost every week, which gives us bonding time and creative time together.

15. An alastain sounds like a parentified child.
    ( I am one of these).

16. I am one of those people that was fiercely independent – by necessity, and then by choice – until I broke from the effort of trying to do everything. Please, please don’t be me. If you’re not great at self-care and setting boundaries and making reasonable goals and commitments, I promise, you can learn. The captain’s advice here is great.

    RE your mum and struggling to accept help – I was also that person. I wasn’t good at asking for help, and when I had to learn, I was initially *terrible* at it. I wanted help, but I didn’t know what kind of help would actually help me – so I ended up turning down offers in confusion. What helped me there was: specific offers. “I could help you by doing X thing or Y thing”. I also find too many options overwhelming, which is common with depression, so maybe that’s going on with your mum. I really hope, but am also optimistic that, this kind of approach to offers-of-help will allow her to accept it. But what I also mean to say is, you’re not in some way being mean or inadequate by offering specific, limited help instead of all-encompassing, general help – in fact, you might put her mind at rest and allow her to accept some help without worrying so much about it.

    Good thoughts to you from this corner of the internet, LW. Some of this advice isn’t going to be totally applicable if you’re really broke – but the same sorts of things can be done even if you don’t have the budget for, say, a cleaner. It’ll help if you can be really practical-minded about deciding what you can and can’t manage, and focus on getting the best results you can with the effort you have. In the end, you’ll be able to help your mum the most that way, so please try not to feel guilty if you’re not able to do as much as you’d like.

    1. I’m on the other side of this, too. I’ve always been very independent so the practical consequences of a serious illness that put me out of work on disability leave were unpleasant.

       For example, when you leave the hospital after surgery they require (quite rightly) that you be accompanied by someone who will go home with you and spend the night in case you need anything or have a bad reaction. I hired home care aides from a nursing service for this which was great but the thing that I disliked most about it was having somebody in my house for hours that I had to talk to. Having strangers in your house can be disturbing even when you know you need them there.

       I like the suggestions people have given the LW for working in outside help gradually and in very small increments to minimize that ‘stranger in my house’ irritation. The idea to have the first cleaning service be done while LW is in the house and her spouse takes her mother somewhere nice is particularly clever.

       Knowing that things can be done in small steps should help everyone adjust. It doesn’t have to seem like going from totally independent to sadly dependent on the kindness of strangers all at once. That idea of getting small bits of help with specific items made it easier for me to accept the need for them.

       What works will vary by personality and resources, of course. As an online kind of person I appreciate commercial service providers like Task Rabbit and Grub Hub but others may prefer a more personalized approach like getting recommendations from church friends.

       An area where LW’s mother may need services is transportation. I was lucky to already be used to taking taxis and public transportation to go places but if LW’s mother is used to driving everywhere, particularly if she was used to LW’s father driving or going with her, she may be reluctant to leave the house just because getting places seems like a huge deal now. Looking into ways to get rides, such as from friends who are going to the same church service anyway or from commercial services, may be helpful.

17. I think that all of the Captain’s advice is really great. My mother is a stroke survivor, my father is her primary care giver. However even he to struggles at time with acknowledging that help is needed. I think one of his biggest hurdles is accepting that things are about as good now as they are going to get. She’s not going to get better from here. So we have to plan for the care she needs, not the care we wish she needed.

    My sister and I have consistently lobbied for them to get more help. They have the resources, she could have someone that they compensate to drive her to different appointments, or that comes a few more times a week than our current housekeeper. She also should probably be seeing a therapist. But all of these suggestions, offers of assistance, anything that we suggest in these areas gets routinely shot down.

    I think one of the biggest challenges for me is letting all of this go, and not beating myself up about it. There comes a time as adults when we end up seeing our parents the same way our (healthy) parents looked at us in our 20s. We can see how their lives could be better, how they are struggling, and that they need us. And we want to fix it. But they are adults. This means that they are still responsible for their own lives and actions and finances. We can try to help, but they ARE capable of handling this stuff, yes, they may need our help, but they don’t necessarily get to define what that help looks like. It has to be help that works for both parties, not just their own desires.

    But we can’t be their parent, and we can’t decide for them what their life looks like.

    At some point the time may come when that isn’t true anymore, and that they do really need our judgement and our decision making. But until that time, sometimes you just have to stand there with a hand out, and wait for them to pull themselves up.

    (I totally agree by the way, about the atheist fake church helping people community. I’m very lucky that I have a largeish group of close friends from my youth, that are somehow organized enough to do things like send fruit baskets and donations when people are bereaved. It’s just so hard to find something like that if you don’t luck into it.)

18. Hugs and kind thoughts your way. I lost my dad to cancer earlier this past year. Having time to breathe and work through your own stuff is so important. This advice seems pretty spot on–some of it would have probably helped me through the period where it was obvious my dad was fading away and no one seemed to have a clear rudder or set of boundaries in place.

19. LW, you’re dealing with a very difficult situation. The first thing I’ll say is that I wholeheartedly agree with everything the Captain said, especially the vacation idea and the importance of recruiting/rallying Team You. When you love someone, especially a parent, it’s easy to put them first in this kind of situation, and it can also be draining in ways that are truly unlike any other human experience. I’ve never had to care for my parents, but my grandparents did live with us for years when I was about high school aged, so I did get a firsthand view of what it looks like. Here are some thoughts, hopefully helpful.

    1. There’s only so much you can do. Part of your brain will probably insist that there is always another thing you can try, another step you can take, and more of yourself – more love, more effort, more time, more everything – that you can give. It sounds like you love your mother a lot, and that’s a wonderful thing. But the biggest challenge, for you, will probably be learning to accept that you’ve done enough. When the going gets particularly tough, you might want to develop a mantra or touchstone of some kind, something like: “My mother loves me. She may be hurting right now, but she would not want me to stop living my own life to take care of her.” Don’t be afraid to look in the mirror and say it out loud, especially after a long day. When people are hurting, it can make them less thoughtful and considerate than usual, but it doesn’t mean they don’t still love us. Accept the flaws, accept that she is having difficulty – but don’t make all of her pain your pain. That path doesn’t make her feel better, it just makes you feel worse, and the old saw that “misery loves company” is a load of crap. I’ve been depressed. I didn’t want to spend time around other depressed people. Neither does your mother.
    2. Caring for someone for a short period isn’t too hard, if you care about them. There’s a lot of effort, but when you can see the end it’s possible to sustain yourself on the knowledge that there is light at the end of the tunnel. More long-term arrangements are difficult. If the situation persists, part of you may think that wanting to take time for yourself means you are a bad person, or a bad daughter. This is false. It is not true. It is incorrect. Okay? I can’t emphasize this enough. Wanting to be healthy yourself, mentally and physically, is not selfish. It is the bare minimum ground state of life. You are not taking a test that can only be passed by hurting enough. You are living your life, and trying to care for a loved one. That is a GOOD THING. You are doing it because you are a GOOD PERSON. Don’t be humble. Appreciate yourself.
    3. If you are trying to find someone to help out around your mother’s house, there are a lot of possibilities. If your mother is at all religious, attends a local church or even has friends who do, it is worth asking them if they know anybody. My parents drove themselves crazy trying to find help until a relative of ours (who had a situation closer to yours) told them to go through local churches, and made a few phone calls to help them get started. In our case, it also helped us find someone who spoke Spanish, which was a practical necessity. If religion is out, then my next question is whether your mother belongs to any other communities. Does she have a cultural heritage that means a lot to her? Does she live in a neighborhood with a common background? You might think that a connection sounds tenuous; don’t write it off. This can help because it can establish common ground between your mother and her hypothetical helper, making that helper easier to accept.
    4. In the short term or long-term, your mother may accept help from some people more easily than others. My grandmother came to accept that she needed help, but one thing that made it easier was the fact that the help was sometimes provided by her grandchildren, furnishing her with an excuse to see them. If your mother has any favorite nieces or nephews, if there are any adult-but-relatively-young people in your family tree that you can call on, they might be able and willing to visit for one weekend a month, or every other month, or something. I don’t know what your family is like, but it’s worth considering if there is anyone within workable distance who can back you up with this, and you shouldn’t be afraid to ask. Maybe someone wants to learn how to make your mom’s cake recipe, and that’s a good excuse to spend a day with her.
    5. From my own experience with depression, it tends to discourage us from doing the things we enjoy and then hit us worse once we stop doing those things. When it comes to helping your mother cheer up a bit, think about how she likes to spend her time. I understand she’s probably not in the mood to go run marathons, if that was her thing, but if she likes knitting, or another sit-down hobby, that might have potential, and serve as a way to help her be happy, associate with friends more, and whatnot. Maybe there’s a way to encourage her to get back into it (such as bluntly saying that you think it might make her happier, and you hope she will do it; no need to overcomplicate). If you find that your conversations tend to be constantly heavy, maybe try to find a TV show you can both watch, preferably something as light and fluffy as possible. Dancing with the Stars? Project Runway? Futurama? I don’t know your taste or hers, but sometimes just having a topic of conversation that isn’t stressful can make a big difference. When I was depressed, I found that there wasn’t much I wanted to talk about. Conversely, when there was something I felt interested in talking about, I felt less depressed.
    6. I don’t actually have something different for this number. I just want to reiterate: loving your mother is great. Don’t forget to love yourself, too. If the kind of help she wants isn’t the kind of help you can offer, that is not your fault, and it is not a failure.

    I wish you luck, or divine blessings, or whatever it is that you want to help see you through this.
    Jedi hugs, also.

    1. Re: #5 – One of the biggest problems right now is that her heatlh issues are making it difficult for her to enjoy things she used to enjoy. She loves socializing and trying new restaurants, but she’s tired and has specific dietary requirements. She enjoys exercise, but physically can’t do it right now. And as for things to do WITH her, she and I don’t have a ton of interests in common… though we recently introduced her to Parks and Recreation and she thought it was cute! Trying to build on that.

       1. This is really, really tough. One of the worst things I ever did was make a list of things that I enjoyed and cheered me up. I thought it’d be a good mental health thing, so I could reference it during tougher times. I became disabled in my early twenties, and it pretty much turned into the list of things I used to really enjoy and mostly can’t do anymore. It’s a difficult transition, and you might not be able to help her much with it. But you have made a good start by finding her a show she likes, so you actually have already helped with one of the really tough adjustments to losing abilities you are used to. I give you bonus points as a helper for going above and beyond.

          You mentioned she’s not really comfortable with technology, but it’s hard to know what level she might be okay with. My mother has always been a technophobe, and she doesn’t even have an email address, but she still managed to get into a little online casual game she can play on a tablet even with her vision loss. Depending on the specific health issues and abilities, a lot of people find benefit in modern technology. It can give you a simple game you can play – even while lying in bed. It can give you music you can easily set up to listen to. For people slightly more comfortable with computers, it can give you social groups you can participate in online. It’s not the same, but it can be a lot better than nothing.

          You might be able to think about her hobbies and interests and see if there’s anything like that she might enjoy. Simple games can be fun and not too draining. Or you can load up a tablet with music and family photos. Ebooks can be a lot easier to read than physical books for some people, because you can adjust the font and the tablet is lighter to hold than a physical book. I’m from a much younger generation, and I have technojoy, so I take to it a lot more than it sounds like your mother will. But hobbies one can still manage while bedridden is a not uncommon discussion topic for people who are disabled. It’s also something you can do some web searches about to see what you can find that might suit her. Maybe nothing will take, but maybe you’ll find another thing she can do. Being bored and unable to do much but lie around thinking about all the things you used to be able to do and now can’t is not great for anyone’s mental health, so fun distractions are really good.

          I wouldn’t want you to feel pressured to figure this out. She knows herself even better than you know her, and she’s likely having trouble thinking up stuff that works for her. Just that it’s something you can keep in mind, and if you come up with any ideas that might suit her, make sure to note them so you don’t forget them. Because health issues always suck, but having fun things in your life makes it a lot easier. Her quality of life won’t just be defined by her health problems, but finding new ways to keep the quality up is so difficult and so beneficial.

          1. THIS. I have CFS and finding things to occupy my time and stimulate my mind while not overtaxing it has been really hard, but technology has saved me. I can get library books on my ipad. I can watch tv on my ipad. I can do crosswords on my ipad. i can listen to music on my ipad. I can talk to other people on my ipad. I’m SO grateful my disability happened after this kind of technology arrived.

       2. Letter Writer, I have a good connection with my mom now, but 20 years ago things were trickier. We had frequent phone calls, but couldn’t figure out how to talk during them. She wanted SO MUCH, and sometimes it felt like she was trying to live her life thru me, which just made me pull back even more. And then we discovered that we both liked watching Star Trek. Hurrah! Something to talk about that was completely outside ourselves, but interesting to both of us.

          Things are much better now. We have a weekly scheduled phone call, and sometimes we talk about Heavy Important Stuff, and sometimes we talk about knitting and our cats and fluffy mystery books. Our connection is strong and we’re both happier. Parks & Rec FTW!

20. Oh, LW, I have so much sympathy for you. I am very sorry for your loss, and I am sorry to hear about these challenges that you and your mom are facing.

    The Captain and so many others here have offered good advice, and since I am going through something parallel but different (just put mom in a home — dementia — dad not coping well, guilting the hell out of me and being rather nasty) I will just offer a few things in addition to what others have said….

    I think guilt is unproductive and so harmful, so when that starts creeping, I look really hard at the situation and ask myself “is what I’m doing enough, and will everyone be okay today/this week/etc.?” and also “if I do this, no one will be actually harmed, right? And if I don’t do *more*, no one will be harmed then, either.” Usually how I decide to deal with a situation leaves everyone just fine, and wherever the guilt comes from, it’s not worth it.

    Compassion is great, and it’s hard to draw lines and boundaries, but you have to have lines and boundaries, and that’s okay. Wowww was that hard to learn, but I am so glad that I did. Sometimes boundaries need adjusting, too.

    My dad is all about control, and one of the greatest surprises that I found was that when I started chest-bumping with him, he started to cave on things. Not that I suggest you puff out your chest to your mom, but sometimes people become ready to accept help, and even your decisions, when you least expect that. If you find that it happens to you, run with it!

    I have to say thanks to the Captain and all the commenters here, because reading all of this has really shored me up. I really appreciate reading about other folks’ experiences and solutions. Bravo and much love Awkwardeers!

21. So the Capn suggested “If things get sour between you during a visit, the best thing you can do is to approach the next visit like a fresh start. This can feel like the hardest thing in the world to do, but it is one of the most gentle and loving things you can do for someone who is suffering and who is experiencing a lot of need and shame around that suffering. Be gentle with her, be gentle with yourself, and give it lots of time.”

    Which I basically agree with, but I am one of those kinds of people who CANNOT just pretend something didn’t happen. I’m a terrible liar and I’m terrible at not feeling how I felt last time I saw someone, and it really hurts me when people play pretend about problems or past occurrences. So if your mom is like me (If she isn’t ignore this entirely!), Just saying something to address whatever issue it was, but also move past previous sourness can be enough. Like, “Hey last time was bad, but I’m committed to today being better!” and moving on, or like “we disagree and it was not pleasant and I’m sorry that was sucky, but today I’m not going to focus on that instead I’m just trying to focus on pleasant thing like this thing I have/planned/snacks” It also annoys the shit out of me to be told to just drop something because its not like I want to be a cranky-pants sometimes, and it’s super fabulous that other people are better at it than I am, so I would avoid telling her what to do and stick with statements that address your end of things. YMMV, obviously.

    1. I am exactly the same, and thank you so much for clarifying this. “Hey last time was bad, but I’m committed to today being better!” is perfect (for me) for acknowledging AND moving on.

22. I loved this whole answer. SO much useful information. I’m taking notes. I think this is a great set of ideas also for Aging Parents in general. I know my parents, who are not yet old enough to need help, are VERY RESISTANT to even the IDEA of help.

    1. My parents were like this for a while, but then had to deal with taking care of several older friends and family themselves. When they saw how difficult it could be on the people handling those situations, it inspired them to set up a bunch of support systems for themselves (turns out there’s a lot of things you can arrange ahead of time, before you need them!). I think being able to visualize what might be needed, and to control the help in advance, made the difference. Good luck with your parents – these conversations are so hard.

23. Reblogged this on Beautiful Cocoon.

24. I don’t have any great ideas, but I did want to say that it seems like the Captain and other commenters have downplayed some red flags in the letter that suggest LW’s mother has long-standing personality issues that predate recent developments and have been an ongoing source of discomfort for the LW. In light of that, I feel like the suggestions made so far are at least somewhat skewed towards the comfort of the LW’s mother at the expense of the LW’s boundaries and safety.

    Caveat: I have dealt with a deeply toxic mother my whole life, and I definitely fear what will happen if my father dies before her. So my perceptions of the LW’s situation must definitely be viewed in light of that.

    1. Thanks for your comment here. I think this is tricky because my mom definitely genuinely means well, loves me, and cares about me. She has been a fierce advocate in my corner so often growing up, and was all-in-all a really great mom. Both of my parents were great parents. I am very similar to her in a lot of ways – we are both very emotional, anxiety-prone, risk-averse people. We both have control issues and want deep emotional connections with the people we care about. We both give a lot to those people and have high expectations of those people in return.

       Some of these things have served me very well, but a lot of those things make life difficult for me, and I have worked to change them. I try hard to let go more, to come up with coping mechanisms, to accept people for who they are in their relationships with me, and the more work I do on myself in those areas, the happier I seem to become. So spending time with my mom can be kind of toxic *for me* even if she isn’t a toxic person, if that makes sense. She often unwittingly does things that trigger me or exhaust me, because we are so similar in those thought processes and behavior patterns.

       My dad, on the other hand, was very calm, very practical, very patient, and almost always on an emotional even-keel. He would help her get things *exactly right*, the way she needs them, even if he didn’t fully understand why she needed them that way. He could calm her down when she got anxious. And I think in some ways he was enabling behavior in her that doesn’t really serve her very well. She needs to find a new normal in his absence, but it’s going to be really, really difficult.

       1. I appreciate you taking the time to clarify.

25. Based on what happened when my husband died, I wouldn’t be surprised if a lot of LW’s mom’s friends have done a vanishing act rather than her actively withdrawing from them, so it might not be all that easy to get them re-engaged with her on a regular basis. (A shockingly large chunk of the people that I/we had known drove right out of my life when they drove away from the funeral. I was only 34 at the time, so I had my job and my kid’s school as sources of interaction with people, but if LW’s mom is old enough not to be involved in those things, but young enough that she doesn’t have many similarly widowed friends yet – say in her mid-50s to mid-60s – it’s going to be tough.) I would definitely look into some kind of group for her so she can be around other people who understand and don’t act like she has the Widow Plague.

    1. So much this.

       I know in my head that many people just have a hard time dealing with grief, and that a lot of people don’t know how to help and so just do nothing. But it’s still shocking to me. We have a huge extended family and circle of friends, and yet two weeks after the funeral…crickets. It feels like drowning in a pool while everyone just stands there watching it happen, and made me so hurt and angry for much too long.

       My mother was eventually able to have some social time that just felt normal again, but it all came via people who were also widowed. I had to finally say screw it and just started inviting people over for I Dare You to Make It Awkward Dinner Parties and In Which I Completely Ignore Your Obvious Discomfort Game Nights. Fake it till you make it; if Widow’s Plague helps me kick your ass at Gloom in the meantime, so be it.

    2. It’s definitely possible that this is part of it. Mom is in her mid-to-late 60’s and I don’t think many (if any) of her friends are widowed, and it sounds like many of them just don’t have a good sense of what things are like for her (and how could they, really). She did try attending grief support groups for a while but stopped going because she was feeling worse rather than better after going… she said something along the lines of “everyone is sad there, I need to be around people who aren’t sad right now”.

       That said, she herself said that she was withdrawing from friends, or at least not able to actively reach out very much anymore. She’s always been one to reach out to people more than they reach out to her, so I suspect part of it is just that her friends aren’t used to the new pattern. I know that I personally have several friends who I probably wouldn’t be friends with if I didn’t do the reaching out. She’s an extrovert and used to have lots of social energy – now she has almost none but is still lonely for the lack of social connection.

26. Not sure where op is geographically but in the u.s. I’d look go at the area agency on aging and AARP, each of which will offer support and resources.

27. Pre-existing relationship issues aside, it often seems in these situations that every conversation between parent and adult child boils down to the parent refusing anything that smacks of change and the child fruitlessly trying to point out that not making a decision is, ultimately, making a decision. So I agree with previous posters: it’s time to reframe the conversation. When your mother says, in effect, “I don’t want any change!” then you can say, using whatever euphemisms seem appropriate, “Change is going to happen whether you want it to or not. Here is a short list of options for how change is going to happen.”

    1. Oh, wow, wht a great way to say it. Memorizing that!

    2. OH. YES. I will be definitely making use of this. Thank you.

28. You have my deepest sympathies. This is not an easy situation.

    Letter writing helped my grandmother and her sisters as they were aging. A lot of my grandmother’s extended family lived far away from her, and it was their way they could show support. My grandmother got fatigued easily and receiving a lot of phone calls was hard for her, but she could read the letters when she was up to it. My mom would send old photos when she found them, which was a nice way to bring up old stories.

    It can be a nice way to keep in more regular touch with your mom without always having to hear her lament about needing help. If you can enlist others to write to her, it might make her feel less isolated.

    When my grandmother and her sister couldn’t travel , we helped them skype with each other. They felt closer than when they were talking on the phone or writing letters.

29. Oh that’s so hard LW. I’ve been watching my own parents go through this with their fathers (both of their mothers died quite young in their 60s) and I’m dreading how I will deal with it when my own parents start to have difficulties – I think my dad will be fine with getting all sorts of help but my mother firmly believes that she’ll move in with me (AGGGGHHHHHHHH!). Clearly this is a very difficult thing and getting old just sucks horribly. I’ve noticed that the older generation (and hell even my parent’s generation) are extremely reluctant to accept the value of outside services like a cleaner or meals on wheels or what have you – it’s just not something they did and was a mark of laziness and usually quite a lot more wealth than it takes to afford such services today. And also, keep in mind that many in the older generation really did move in with their ailing parents and act as their full time carers, or at least come and do everything for them every day, especially the women.

    Uh, I don’t have a solution to any of this, really, except to say that it’s clearly a lot easier to have these discussions sooner rather than later and a lot easier for the elderly people themselves to make these decisions voluntarily rather than be forced into them by circumstances. My remaining Grandfather collapsed and had to go to a nursing home (even though his daughters were coming and cooking and cleaning for him he started to need constant care) and being forced into that situation has made him extremely unhappy indeed. My take away from that situation is that while it’s tempting to avoid arguments and upsetting discussions until you’re forced into them by circumstances it might be a lot better to start discussions on people-who-aren’t-family providing assistance *before* it’s a crisis and has to happen immediately. I suppose this would look like laying out exactly what you can and can’t do now, and then starting the discussion about how to cover stuff you can’t do right away. Ugh. I did try to convince my other (now deceased) Grandfather to accept some council yard work services I looked up for him (there was a great deal where the council would mow your lawns and provide handyman services and such for $5 a go for seniors in order to help them keep living in their homes) and I tried to convince him it was a luxury he deserved and that if he didn’t like the job they did he didn’t need to get them back, but sadly he never believed me. He thought it was a horrible rort and they would rob him and do a half hearted job and break stuff and wreck his house. 😦

    So uh, jedi hugs for you. I hope things get a little easier, and I’m so sorry for your loss. 😦

30. I have A Lot of Thoughts on this, as I’ve been going through a similar situation long-distance for several years now. My father passed away suddenly in 2011, and my mother has long-term health issues that got much worse in the last year. I’m 2,000 miles away so I’m not involved day-to-day. Also my mother is a toxic person for me to be around and as the designated scapegoat it’s best for me to stay far away both physically and emotionally, while supporting my (enmeshed Golden Child) sister as she supports our mother. I have to leave in a few minutes, but a few quick thoughts:
    – resisting help / bottomless pit of need: oh heck yeah. Watch out for this. My mother spent several years guilting my sister to get her to drop everything and move in to take care of her full time. My sister was already enmeshed/well-trained to do anything to please her, so this was really hard on her. My role was to support my sister and remind her that, no, it’s not reasonable to expect her to give up her life, especially when there are so many external resources available to do all the things mother insisted sister had to do. Do you have a close friend (and/or your spouse?) who can provide that kind of support and regular reminders to you?
    – be prepared to hit bottom, maybe more than once. In my mother’s case she had to “hit bottom” three times with serious health scares that put her in the hospital – and very nearly in an assisted living center – before she started taking responsibility for her health and accepting the external help she needed. The good news is that after the most recent scare – about 3 months ago now – she’s really turned around and is doing great, physically and emotionally, and getting lots of help.
    – logistics: if your mother belongs to an HMO look into resources there. The last time she was in the hospital they sent a social worker to meet with her, and she was fantastic! She told us about all kinds of resources we didn’t even know existed – home health aides, free transport programs for seniors, therapists, etc. – and managed to talk my mother into accepting them.

    Sending lots of Jedi Hugs your way! It sounds like you’re doing a really good job of taking care of both yourself and your mother, that’s a tough thing to do. You’ve got this!

    1. Hi @peregrinations – I am also living with the issues to do with being a scapegoat child of a toxic parent. For people in our situations – or even for those like the LW, who have a basically OK but sometimes difficult relationship with their parent – I would recommend a book called “Your turn for care”, by Dr Laura Brown. Dr Brown carefully explores a topic that is usually unmentioned – what happens when you have suffered abuse in your family, and then you have to look after your abusers when they are old?

       Dr Brown’s website can be found here: http://www.drlaurabrown.com/written/your-turn-for-care/

31. Oof. So sorry for your loss, and the difficult situation you’re in. I have a few recommendations – first, look into caregiver’s support groups in your area. I think it could be a useful and helpful community, especially for resource locating and for insight into how other people have drawn boundaries to protect themselves. Maybe just being around others who are struggling with similar issues (and I promise you, you’ll find a lot of discussion in caregiver support groups about guilt, responsibility, and the “bottomless pit of need” – which is even more complicated when the need is real.)

    Second, know that whatever happens, it’s not your fault and it’s not your responsibility. You can do only what you can do and no more – you can’t solve everything. I’ve worked with families moving their loved ones into assisted living and memory care facilities, which is always really difficult. Often the family members feel that they’ve failed, or that somehow things could be different. There are a few realities about losing independence, whether it means hiring people to do things you used to yourself, giving up your driver’s license, or moving into an assisted living community – nobody wants to do it, it’s a painful reminder of a future that will likely bring increasing dependency and lack of control, and it can be really terrifying. It’s difficult to see someone you care about grapple with those realities – but please know that you’re not responsible for making it OK (and also, you can’t make it OK). It sounds like it would be difficult to convince your mom to see a therapist or grief counselor, but if she could be persuaded to try it, it might help. And no matter what, keep reminding yourself that you love your mom, and you will do what you can to help her, but it does not make you a bad person to draw the line – wherever that line is for you.

    1. You are so wonderfully correct

32. As someone who is severely disabled, my experience with this is from the other side of things. So, I want to bring up a few issues that might not spring to mind. Also, from my point of view, you have two separate issues that annoyingly are stuck tangled together. On the one hand, you have a mother with health problems and significant needs that you want to help as much as you can without causing harm to yourself (and seriously, do keep your own needs in mind, it won’t help either of you if you try to give too much and hurt yourself in the process – even if you can’t give as much as she truly needs, then that just needs to be faced as a sad truth), but you also have what sounds like a tricky relationship with your mom and communication issues such that the two of you aren’t good at working together to find the best solutions that can be reached. She sounds like she’s in denial about what you can realistically give, which makes things harder, for which I am sorry. I can’t really help much with the latter half, so this all focuses on the first half – helping someone with significant ongoing health issues.

    Many people have tried to help me, and it has been varied how well it actually helps. Some people have tried to help me, and it’s just led to fights. From my point of view, they weren’t really paying attention or getting the problems with the solutions they were offering. So, one of the things that has been most helpful has been a friend who has set aside a regular time when he is free (with exceptions coming up now and then) that I know in advance he is available to help me out. This is really useful because scheduling anything I need help with (which in my case includes getting to most of my doctor’s appointments, which may or may not apply for your mother) is kind of nightmarish when you call some place up to make an appointment, then have to call around to see if you can arrange to actually do it then, and then need to cancel if you can’t find anyone and try again. Whereas, knowing that if it’s on such and such days of the month, each month, then I can schedule it makes life so much easier. So, I am giving a great big thumbs up to the Captain’s idea of set a regular, predictable pattern for when you see your mom if you can, and let her know she can arrange certain types of things you will help her with at those times. However, if she tends to rope you into helping in ways you aren’t comfortable, then set some parameters in advance. Saying you’re available to help does not mean giving up the right to veto things that make you uncomfortable. So, you can offer specific types of help, like I’ll drive you around for that day or I’ll help with X,Y,Z housework chores that day, or so forth – and then let it be her choice how she uses that.

    I keep thinking about the whole having people over to help. And I wonder if she might be uncomfortable with it for some of the same reasons I am. Don’t get me wrong, I would leap at the offer of somebody paying for a cleaning service for me. But what would be running through my head is… it makes me really uncomfortable and anxious to have strangers in my house, so that day is going to suck. And I don’t actually have the energy to get dressed and look presentable every day, but I can’t exactly have strangers in my house while I’m in my pajamas with my hair unbrushed, so I’ll need to wake up early and spend a portion of that day becoming presentable enough so that they can come over. … I can see her not wanting to bring up issues like that, as she may be embarrassed about them. Again, I don’t know if any of those apply to her, but mental health issues like anxiety can have stigma, and not having the energy to look presentable daily can be a hard thing to admit when it’s still new to you. Especially if you kind of do and kind of don’t, such that you really can’t manage it reliably and won’t know in advance if it’ll be a good day or a bad day, but you may still feel like of course you can manage to just get up and cleaned and dressed, because you’re used to the little voice in your head that says you’re not trying hard enough and getting ready for the day isn’t a big deal, even though it has become a huge energy drain. Basically, a lot of her unreasonable objections could spring from her self-denial, difficulty adjusting, or embarrassment. I don’t know if knowing that will help you or not, but since you presumably know her well, it might help you think of ways of dealing with it if you think that might apply in her situation.

    I like some of the ideas mentioned, already. But it might also be worth asking her what she feels are her priorities – which tasks she has trouble with are the most important. It can be okay to let things slide… although that may be something she still needs to come to terms with. But you need to work out what really matters. For example, letting dirty laundry pile up is fine so long as it gets done now and then enough to still have clean things to wear. Not eating for the day is generally not fine. Haircuts while useful can be put off, but acquiring more medication or toilet paper really can’t be. The yard can get somewhat weedy, but the house should be kept clean enough to not get infested with bugs. If either or both of you is thinking in terms of how to maintain everything as well as it was maintained when she was healthy, well, that’s probably not realistic and may not be possible. Maybe it is… with enough money, I guess it could be pulled off. But for a lot of people, it simply isn’t. And while it can be hard to learn to accept lower standards, it is often necessary. But, if at all possible, you want to still maintain things well enough for reasonable health and well-being to the extent one’s body will let you.

    So, I’d suggest prioritizing tasks and then focusing on the high priority ones and not getting dragged into conversations about low priority ones until the high priority ones are sorted out. Questions like, “What task are you having the most problems with that you really need to do?” can be useful. For me, it was (and still sometimes is) getting to medical appointments. Which is why the solution I have now is so helpful. My new high priority thing I could use help with is getting enough to eat each day, which I sort of do, but not nearly as well as I’d like. That probably sounds like a big vital thing, and it kind of is, but it’s also something that has degrees of how well you can do it, so it became my second highest priority, not first. I think tackling tasks one at a time can help both because you can adjust to the solution to one, and it’s just a way people tend to work better – breaking up a huge problem into a bunch of small problems. It sounds like she’s currently in a situation good enough that she’s surviving it, so it’s not like you must solve the whole thing at once.

    And finally, be really upfront about your limits. I know it’s tough, and she might not appreciate it. But it’s so much more helpful. Tell yourself over and over, if you need to, that you are doing the right thing, because you are. Because having a bit of help from someone that they truly are willing and able to give is so much better than having a sort of offer for help that I have to worry about whether it’ll actually be there when I need it or they will act very grudging about it and make me feel even worse about everything. Predictable and reliable help is fantastic, even when it isn’t all of the help that I want. You can plan around predictable, and it doesn’t feel as bad. Needing help, much like giving help, becomes draining when it is a chronic issue. Maybe I could get more help than I do, but it’d be at the cost of trying to pester people for more help, which would cost me in the pestering. This is quite possibly part of why she doesn’t reach out to her friends more – even if she could get them to help, it might be draining to reach out that way. So, back to reliable, predictable help with clear boundaries. I assure you, it’s the best thing for both of you in the long run. And predictability helps with control. When your body is falling apart on you, and your ability to keep your life going on your own is falling apart, and you suddenly have way more tasks than you can do, having somebody who said they’d help you in some vague sense flake when it comes to the actual needs really adds to the feelings of being overwhelmed and… drowning. I can’t really think of any better way to describe it. It feels a lot like being dragged under, except much more slowly. While predictable, reliable help is a small lifeline that you can, at least, hold onto while you doggie paddle furiously and gasp for air. So, don’t offer more than you can, but offer what you can as clearly and predictably as possible.

    1. This was really help for me to read today. Thank you for posting it.

    2. This is all really, really helpful. Thank you.

       >I wonder if she might be uncomfortable with it for some of the same reasons I am. Don’t get me wrong, I would leap at the offer of somebody paying for a cleaning service for me. But what would be running through my head is… it makes me really uncomfortable and anxious to have strangers in my house, so that day is going to suck. And I don’t actually have the energy to get dressed and look presentable every day, but I can’t exactly have strangers in my house while I’m in my pajamas with my hair unbrushed, so I’ll need to wake up early and spend a portion of that day becoming presentable enough so that they can come over

       Yes. This is definitely part of it for her. She highly values her privacy and her own space. And another part of it… for the last few months of my father’s life, he had in-home nurses 24/7. This was so, so hard for my mom. She didn’t feel safe in her own home. She couldn’t really relax there. My father dying was sad, and she grieved hard, but there was also a sense of relief in it too, because he was no longer in pain… and she had her own space back. The idea of having someone that she doesn’t know or trust yet back in her space is very, very hard for her.

       1. It might be possible to ease your mother into the idea of ‘stranger in my home’ with a housekeeper or cleaner who visits her on the same schedule that you do. If your new routine is to visit her on the first Saturday of every month to do bills and then go out to lunch, perhaps a cleaner could visit at that same time? The housekeeping gets done while you’re at lunch and then she comes home to a lovely clean space. I appreciate this might not be do-able but wanted to offer up the idea in case the format is helpful for gently introducing new people into her life.

33. Dear LW,

    My condolences on your loss. My father died 7 years ago, I dream of him almost every night. The time immediately after his death was made more difficult for me by the way my mother treated his death as her loss alone. So again, I’m so sorry for your loss.

    I have only two other thoughts.

    The first is a suggestion that you look into geriatricians and social workers at your local council for the aging, and/or the hospital associated with your father’s care. I mention this because these are people who have dealt with problems like yours, and who can point you to helpful resources.

    My second thought is Team You. You’re having a rough time.

    Jedi hugs if you want them

34. My grandmother wouldn’t accept a cleaning service and wanted us to come over and clean her house. I went over, but brought a friend to help me. After a couple of times, we mentioned my friend cleaned houses for a living. By then she was known, and had already proven herself, and my grandmother paid her instead of me paying her. Eventually my “friend” ended up doing more and more for my grandmother, but slowly, as Grandma became more comfortable with the idea.

    I’ve used the same technique since with other family members. Obviously I never told anyone else I was hiring people through a home health care service. It just happened to work out that I had a lot of friends there.

    It’s also important everyone knows they aren’t “stuck” with the first person who comes to do the job. If the person cooking dinner uses too much pepper and won’t take suggestions, she’s replaceable without a lot of fuss and it will happen right away. A great-aunt was happy to accept “help” once someone from the service came over to discuss what she needed and how it worked, including, especially, how she didn’t have to fire anybody, she just needed to call the service and ask for someone else. The helper would never know that had happened.

    Definitely, the first time a new person comes, someone besides your Mom should be there, to reinforce Mom gets to say how she wants things done, and to run interference with people who are going to “Dear” her to death, and make it clear, Mom isn’t all alone but has family that spends time.

    1. I love this. I sum it up as: At some point, you’re going to have to start lying. That sounds horrible, but it’s the case, and it goes along with: At some point, you’re going to have to start snooping. As parents get older, the roles are reversed. I’m NOT recommending giving all adult children a sudden license to become horrible. I am saying to be easy on yourself if that’s what it comes down to. For example, my grandmother would not spend money on herself. She needed new clothes, nicer things that were warm and fit. My mother started getting things that didn’t fit quite right or that were on sale and maybe Grandma could do her the favor of taking them because they’d be going to the thrift shop anyway. For another example, my friend’s parents had too much to handle just taking care of themselves and going to doctors. He lived out of town and had to make sure their bills were paid. He swooped in, practically demanded computer passwords, set up online accounts, and took care of making sure everything was paid from a remote location. They objected at first, then sheepishly admitted it was nice having someone competent in charge.

       The thing that’s helping me the most at the moment is reframing every complaint in my head. I look at my parents and think of them as toddlers. When 3 year old fusses and complains about things like having to take a nap or not being allowed unlimited cookies, the child may be thinking “my parent is being horrible for making me take a nap and not giving me cookies.” The wise parent smiles and gently insists. It’s the same when my parents complain when I don’t drop everything to drive them places, don’t do their housework, don’t make everything right for them. I listen to what they mean as accusations and hear instead “I hate being old. I hate not being able to do what I used to. I hate that I’m weak. I hate that I’m cranky. I hate that I hate all this.” Sometimes I address what they’re not saying directly: “If I could change the ways of God and life, I would. If I could make you young again, I’d do that. If I could change it so you didn’t have to take so many pills, see so many doctors, watch everyone around you suffer their own disabilities, I’d do that too. As it is, I can’t even fix the home blood pressure gadget.”

       (No one in my family believes in God, but they understand what I’m saying– for a few minutes. Then they go back to complaining and accusing.)

       1. My aunt took my grandmother to get new shoes. My grandmother was appalled that the shoes cost THIRTY DOLLARS and refused to pay more than ten. Shoes should not cost thirty dollars!

          This was in a small town so of course my aunt knew the clerk. She whispered, “I will come back with the rest of the money later.” My grandmother was able to pay what she thought was fair but the store still got their money.

          I am still impressed with how my aunt handled that. I would have argued with my grandmother because she was, you know, wrong.

35. Oh, LW. All the Jedi hugs in the world.

    I am on a very similar path, just six months further down the road. My dad died a little over a year and a half ago, right in the middle of my mother’s health problems. I, too, am my mother’s only real source of support and trying to be everything she needed was killing me for the first year. But it has gotten better.

    Everything the Captain said is spot-on, as usual. Here are some specific things she touched on that helped me:

    – Finding pleasurable things to do separately and together – especially things that got us outside and moving a little. Go for a walk or drive someplace pretty. For me/us that was most often the beach (shout out to Big Sur and Oregon’s southern/mid coast – y’all saved my life, no joke). But no matter where you live, there is some place serene and scenic to enjoy: a park, a forest drive, a botanical garden, a lake with a dock to sit on, an art museum with zen-like benches. We went for slow walks and when mom couldn’t walk we went for drives. We went to A LOT of flower gardens because: mom. It all helped. Even if your mom won’t go with you, do it yourself. This was the single most healing thing I did all year, by far.

    -Making a schedule. Organization was a great coping mechanism. “Here is what I can do today, that is all I will do today,” was really helpful in managing my stress. And scheduling in my self-care FIRST, especially the pleasure-serenity stuff and regular quiet time. The hardest, most stressful stuff came next, broken into small, manageable tasks whenever possible. Also helpful: I became ruthless with “obligations.” If it wasn’t absolutely necessary to my employment, my immediate family welfare, or my sanity, then it noped the hell out. If I spend a year missing some baby showers and weddings of people I only marginally like, so be it.

    – Finding other allies for mom. My mom’s closest friends all bugged out on her, as did all of our huge extended family. That was really hard on both of us. But there were other people to be found once we looked. Most often it was other women who had also lost a spouse. One casual acquaintance – the wife of my dad’s fishing buddy (he died three years before my dad) – is now my mom’s closest friend. It took time, but their common experience brought them together.

    – Having the difficult conversation. After a year of this I was a mess and knee-deep into a serious health scare of my own. Spelling that out for my mom and setting some boundaries was really, really hard and it took me a year to finally do it. But six months later, I can see that it was the turning point. Since then things have been slowly getting better.

    Above all, this: taking care of yourself IS taking care of your mom.

    So is gently, but firmly setting boundaries. Being solely dependent on you isn’t good for you or your mom. My mom didn’t truly start to heal until she started to stand on her own, separate from me. Finally understanding that helped my guilt a lot.

    It sucks right now. It does get better. Take care of yourself.

36. LW, goddamn I’m sorry. We lost my much-loved father 5 years ago so I feel your pain. We had a similar situation – though thankfully I have 2 sisters so the burden could be shared somewhat, though I was the closest, the one without kids and the one most able to take time off and be practical about things. So I supported my Mum, took the late phone calls, showed her how to pay her bills, listened to her cry and basically stood in for that beloved man…for 18 months.

    And my grief for my father welled up behind that wall of solid responsibility and when I finally cracked and could.not.deal with another phone call from my mother asking me to look something up for her, I just said no. I couldn’t do it, and yes it was too much to ask (yep, I actually said that about a Google search…)

    Probably not my finest hour. Though it had the desired effect and I think it made my Mum realise that her bullet-proof daughter was also grieving that profound loss and couldn’t always cope with everything, however much she tried. So maybe some honesty at some point would be helpful? You cannot be your father’s replacement. And trying to be, will kill you.

    The Captain is right about setting the communications plan. Knowing when you’re going to call, and sticking to a routine gives Mum some security while giving you time to take care of YOU.

    The other, really hard thing, is knowing when to let them self-soothe. Does it feel like your roles just reversed? You are now the adult, your mum the child? That’s how feel. Last we checked, mothers were adults, a fact they can forget when under stress. They are walking through the valley under the shadow of a very real death and that walk will be long and arduous. And they need to channel their own inner determination to keep walking through. This may be the hardest thing they ever do. And it’s impossible to watch, as someone who loves them. This is a marathon and not a sprint – don’t use up all your energy in the first mile. It’s going to take time, and everyone’s grief works at its own pace.

    My mum benefited from travelling (which she always loved), from seeing a counsellor, from being with friends, from getting massages and having us come and stay for a weekend. My mum doesn’t know how NOT to be busy, she still works. And I think that busyness has helped in the long run. All the suggestions above are great for ideas to get your mum moving and how to change the focus of the conversation away from the desire for things to go back to how they were, and to deal with the reality you both now live in.

    Please take the time to grieve your father. You need to take care of yourself before you can take care of anyone else. Guilt is a really great way to waste your time and energy on something you probably can’t change, without giving you anything positive out of the effort.

    TL:DR: take care of yourself (first!); help your Mum to learn to self-soothe in other ways and find her path without your dad, and don’t let guilt dictate your actions. Keep breathing, LW, and the biggest Jedi hugs to you.

    1. Thank you for your comment here. It definitely feels all too familiar… especially the part about cracking and saying no on something insignificant, because you just can’t. I definitely have been there.

       When my dad first passed away, my mom was so wrapped up in her grief that it just didn’t seem to occur to her that other people would be grieving. She said some very nasty things to me that caused a rift in our relationship for about a month or so, which we were able to repair (in part because she realized how hurtful her words had been, and in part because had that realization that I was grieving too).

       Now she’s so wrapped up in her physical pain and her loneliness that she can’t see beyond the present moment again. It is exhausting to feel like things with her are always either on yellow or red alert, and trying to figure out the difference between yellow and red in any given moment isn’t always easy.

37. “I know you wish I could be here doing all of this, but I need to tell you straight up: I cannot. I will visit you and call you every (set time period), I will love the hell out of you, but I cannot step in as your grocery-shopper/errand runner/bath giver/med reminder/housecleaner. Caring about you is my job as your daughter, but caring for all of your needs in the daily sense is an actual job, and one that I know that I can’t take on. Please let me help you set up some services for yourself so that you can be taken care of the way you need and deserve.“

    I rarely don’t like the Captain’s suggested scripts, but having been through this with my Mom, this was a script that worked badly for us.

    For one thing, it’s framing the outside services as inferior to you, and as something that happens to people with Less Good Families.

    What I said to my mom was this:

    “Mom, you need, and deserve, to have these things done by professionals, who are good at them, who have standards they’re expected to meet, who can quit if they don’t want to work for you, who you can replace if you don’t want them around you. You have my love and goodwill, but you should never, ever have to depend on it or on any one person to get your needs met. What I can do for you is find you the help and services and equipment you need and help you get it all set up to suit yourself. Then when I’m with you we can be mother and daughter, not patient and caregiver.”

    1. This is super helpful! I’ve been trying to express to my mom why I don’t think caregiving for her parents should fall on her and her siblings, and grasping at “people get paid to do this job for a reason” and “this is a job that requires certification and training for a reason” and it keeps coming off as snobbish or entitled to her. The way you’ve framed it is perfect. It isn’t fair to anyone involved to combine all of those roles (parent and patient, child and caregiver).

38. Coming from personal experience in elder-care, here:

    And, in the things that a family member probably does need to be involved in, it would be valuable to ask her pharmacist to do a meds review with her present and including dicussion of OTC drugs. If they find any worrisome possible interactions or signs of overmedication or etc, an appointment to see her doctor about it is advised.

    She may be on exactly the right meds and still having this much trouble, but she’s fatigued and depressed and in pain and a scarily large number of seniors are on the wrong meds or too many or the wrong doses or some combination of those, so if you have limited energy that is a good place to put some of it.

    1. Yeah! Or a webster pack if that’s not something the LW had organised already. Thats when your chemist puts your meds in a pack divided into days and times (breakfast, lunch, dinner night) and all you have to do is pop out the correct box for the time of day. Easy to tell if doses were missed and no worries about overdosing either because its all prepacked.

       1. OMG you can get the pharmacist to do that?!!!!?
          That is one of my mother’s main super-stressful tasks, sorting out her pills.
          Thank you!!!!

    2. Fortunately my mom is VERY vigilant about this sort of thing. She has the pharmacist on speed-dial (literally) and will triple check to make sure her meds won’t interact.

       She still may well be on the wrong meds, because they don’t seem to be helping, but she IS trying to figure that out with the doctors. It’s just that going to the doctors when you have a chronic issue is exhausting in-and-of itself, because you get a lot of different opinions and none of them seem to really know anything. (I have and have had chronic health issues myself and it is all too familiar.)

       1. Ugh, yeah, I know that feel. I’m glad to know she’s on top of it and sorry that it’s being intractable.

39. I keep thinking about this letter, and I’ve been trying to think about why some of the attempts to help me not only didn’t work, but made me feel worse – despite being really well-intentioned. I think the key thing they did wrong was focus on too much of an end goal rather than the step right in front of me, while acting as if it was simple and easy to get there. Here’s a specific example. I had a friend who felt I ought to see a sleep specialist (which was true) and wanted to help me by researching local sleep specialists for me… which was not helpful. I wasn’t in a good position to articulate, at the time, why this wasn’t helpful, and she seemed to interpret my attempts at it as obstinate and me not really wanting help. But I did want help. I just didn’t need that help, despite the fact that I did need a sleep doctor. I actually now have an actual diagnosed sleep disorder and a CPAP machine which is helpful in treating it, but the help I needed was very different than what she offered and tried to get me to do. Here were the actual steps, pretty much each one of which I needed help with.

    1. Talk to my general practitioner and get some sort of referral, because going straight to a specialist would run the risk of not being covered by my insurance and costing tons of money.This involved both figuring out how to approach the issue with my doctor and figuring out how to get to the appointment with my doctor.
    2. Getting a sleep lab done after my doctor ordered one. This involved getting to the sleep lab clinic that night and getting home that morning.
    3. Talking to my doctor again (getting to another appointment).
    4. Researching my results on my own. Finding a potential sleep problem I might have had despite my initial results appearing to rule out obvious problems. Finding a place that could test for the potential sleep problem I might have. Figuring out a way to bring this up with my doctor and getting yet another appointment with my doctor and getting there and back.
    5. With the referral to the place that would do more involved sleep testing, get to an appointment there, which involved significant time and travel each way such that it involved fairly significant help every time I had to go there.
    6. They scheduled a sleep lab that I had to get to the night of and back the day of… each half of which would require significant help and assistance to accomplish.
    7. Get to the follow-up appointment to discuss the results.
    8. Yay, I have a diagnosis and a prescription, and it turns out I actually had a very common sleep problem that we thought we’d ruled out, but my first sleep lab just didn’t pick up on (false negative). Now I need to get the appropriate treatment supplies.
    9. Followup to discuss and see that I’m being treated properly and work out any issues with treatment, still far away and hard to get to.

    If any of these steps from 1 to 8 had fallen through anywhere along the way, then all of the effort would have been for nothing. And my friend was treating it like a simple problem of just go find a specialist and talk to them. And when I thought about all of the steps that might be involved (some of which I didn’t know yet), and that it might all have been for yet another dead end like many paths I pursued were, it is overwhelming. So, focusing on a step immediately in front of you is so much better. If my friend had offered to help me work out a way to discuss it with my GP and then have us schedule an appointment she could take me to, that would have been helpful. But when focusing on finding a specialist, it’s partway into the process and thinking partway into the process can be too exhausting, because you start thinking about the whole process. I actually did end up doing that research, and if I had been at that step, maybe the offer to help with it would have gone over better. But starting at that point made me feel pushed to do that step, when that wasn’t even the thing that currently really needed doing.

    So, if objections seem to be about things that need to be done to get that done, see if you can find something direct and immediate and as early into the chain as possible. It’s not always easy to see the chain. And it can be really hard if the person sees steps you don’t, but can’t communicate them. It may not always be possible. It’s not your fault that you’re not a mind reader, and you may not have all of the information, plus you’re not expected to be perfect. But whenever possible, look for direct, immediate tasks right now that need doing that can be done, and aren’t an overwhelming here is the whole course of the future sort of thing. For anyone who is dealing with an issue that is overwhelming, simple direct immediate steps are more likely to be something they can handle thinking about.

    So, I mentioned before breaking things down into little pieces, but I think that’s really a hugely beneficial thing if you can do it. Especially if the person you’re trying to help is having problems breaking it up into little pieces. Sometimes the first thing you can do to help might even be just working on what is one little change we can make or one little thing we can do that would be of some benefit. Once you have some forward momentum, it’s a bit easier to start working out a bit more of a plan, but at first, simple, little positive things can be really powerful.

    1. I think my mom would DEFINITELY relate to what you’re saying here. This is exactly the kind of help that she rejects. And with most things I’m good at breaking things down into little pieces, but what I really struggle with are the medical issues. I feel so incredibly out of my depth there. For example, my mom has said several times that what she really needs is an advocate at doctors appointments, but then when I try I feel utterly unequiped to actually do that.

       Actually, if I had a clone of my mom in better times I’d send her in to be her own advocate, because she was AWESOME at it. She knows what questions to ask, when to push back and when to try to find another opinion, what meds generally do. She was actually a volunteer at a local hospital in the ER for a while. Me? I have an actual phobia that I have to worry about confronting any time I go to a doctor’s office. If it’s not my own medical history I get overwhelmed and tend to mentally freeze up. I don’t think of the right questions to ask. I can drive her there, or sit in the office and keep her company, but I’m a lousy advocate. Problem is, she just doesn’t trust anyone else in her life enough to want them to do it.

       1. That’s really tough for both of you. I have a great deal of sympathy. It’s so frustrating when you put all the effort into an appointment, and then afterwards, you realize things didn’t go well, but you couldn’t make it work out at the time. And as someone who has dealt with cognitive losses myself, it is incredibly frustrating to mess things up you used to be able to do. It really hammers in a sense of helplessness and loss of control when you need to do something that you used to be good at, and now when you try you keep messing it up.

          I’m not sure what the ideal solution is for you and your mother. It seems like you aren’t the best pick for an advocate, but I don’t know who would be. If you could find someone, you might be able to let your mother slowly get to know such a person, to make it easier. A lot of the advice about working care workers into someone’s life slowly strike me as really helpful. Think about it, would you want to put your health and life into the hands of strangers? There was a previous letter where we discussed how awful trust games are in the comments. There’s an extent to which this is kind of like a big stakes trust game. So, it’s a lot easier if trust can be built up a bit more naturally.

          Some things you can do though involve pre-planning. Within disability communities, I often see the advice to write down questions for your doctor before your appointment so you don’t forget them while you’re there, because this is a common problem. If your mom was good at this stuff, you might be able to use some of her abilities still, even though they are decreased. You can do brainstorming before appointments where you discuss what you want to make sure is covered, what you think might come up, and how you should handle it. She might have good insights into a lot of that, and if it’s written down and you can go over a checklist, it should be a whole lot easier than trying to figure out what to ask in the moment. You also might want to see if some of the doctors will communicate by email – that’s pretty common these days. It can make it a lot easier to ask or check about things that got missed in the appointment. Those things should make it easier.

          But I do think, long-term, you’re right that you’re the wrong person for this task. I rather like some of the scripts that others have mentioned about framing it as your mother deserving better. A good medical advocate is someone who has a reasonable understanding of the medical issues involved. They don’t need to be a doctor, but they should be fairly comfortable with the relevant medical stuff. So, you can let your mother know that you care about her, but you just aren’t as qualified to make sure her medical care is dealt with properly, and you want to make sure she’s getting help from people who are. Also, the phobia is a completely legitimate reason for you not to be doing this. I don’t think it’ll be helpful to bring up, but yeah… this just isn’t a good task for you. So, I think the key thing is to let her get to know someone else who can do this task (if you can get someone else who can do it), and give her some control over that too if you can. Let her know that if she has any problems with her medical advocate, then she can tell you and you’ll try to deal with that. Basically, just limiting the aspect to which she feels like she’s putting her ability to stay alive into the hands of people she doesn’t know and has no reason to trust, because that is an inherently scary thing to do.

40. Oh hey, are you my mom??? Because this LITERALLY happened to her. My grandmother was a Difficult Person who refused to leave the place she always lived (understandable) but also never forgave her only child (my mom) for not wanting to stay Right There We Gave You Land To Build A House Why Did You Move 5 Hours Away. No solution was good enough.

    I really nth the Captain’s advice to ask her what help looks like to her. It REALLY helps to get the unspoken spoke. If she’s operating under the assumption that you’re going to retire and move in and live with her in the middle of bumblenowhere (whoops, that’s my grandmother again), it needs to be said and not hinted out in increasingly dramatic sighs.

    Someone who is ill and in pain and foggy may not be able to fully advocate for themselves. But the sense of self, sense of dignity is the last thing to go. And everyone deserves to be treated with respect, even with the respect to expect them to accept (that’s a fun sentence to say) a no. With the respect to let them hear that other people cannot give what does not exist (unlimited energy) and with the respect to ask them to participate in their care enough to make decisions that work for all parties involved. When we finally gave my grandmother that respect, when we finally told her that she had to make some choices and here are the options that we see and here are the problems, she let us bring in some in home care to check on her a few times a week. Way less than we would have wanted, but it was just enough to keep her in her house until her final 3-day hospital stay. and that’s really what she wanted, once she thought about it.

41. My mom’s personality sounds so much like LW’s. She is a loving mother who I love being around sometimes, but other times her neediness is hard on me. Our personalities also clash, and I feel I have to hide a lot about myself from her. But a few years ago she was diagnosed with a terminal illness and it was expected she would have six months to a year to live, so my husband and I moved across the country to be with her. The emotional pull I felt was so strong that I really couldn’t ignore it. After a really scary time, her illness is somewhat under control and she could be with us for a long time. For this I am so immensely grateful and happy. However, morbid as it sounds, my husband and I didn’t expect to be here this long. My hometown is a very bad fit for us (career-wise, politically and culturally) and we miss our old city very much. My husband wants to leave, and he has already made a huge sacrifice to be here. My mom assumes we’re here to stay and thanks me for coming back with tears in her eyes. She knows I miss my career and feel unhappy here; I just don’t fit in, which is why I left right after high school and never had the desire to move back. Somehow it feels impossible to say no to her, no matter what, and I’ve let work and my relationship suffer to spend time with her. Even though she doesn’t need physical care yet, I feel as though I’m an emotional caregiver. I’m the oldest, dutiful daughter and my siblings have been happy for me to play this role, willing to make any sacrifice. The old part of me that was career-driven, independent, and free-spirited seems completely gone. I’ve had to get into therapy to deal with bad anxiety that has set in from trying to keep my mom and my husband happy. So I think we should go. But when I imagine breaking my mom’s heart with the news that we’re leaving I feel like it will be impossible to do. And when her heath starts to rapidly decline, and she needs me more than ever, what then?

    LW, I understand what you are going through, and I am sorry because I know it hurts. You do what you can do every single day, and you make choices now that you hope you won’t regret later. One day you choose her, and another day you put your husband first, and hopefully some days you choose yourself. There’s no one to tell you what choice is best; you just have to make it up as you go along. Try to trust your choices, because you obviously think them through with as much care and compassion as you possibly could. Love yourself for being so caring and kind. You are a great daughter.

42. My longest, hardest jedi hugs to you.

    Try to find a caregiver support group in your area. Maybe your family doctor can recommend one or a place to start.

    Also, what worked for me was trying to separate each choice. This weekend, I will tackle my mother’s taxes. Next weekend is focusing on my kids/husband/me. The weekend afterward is her eye doctor appointment.

    I try not to project too far into the future and try to load on the self care. I book and maintain that like it’s a religious obligation (reading, knitting, yoga, tea – gallons of tea), just whatever works for you.

    If I look at caring for my 78 yo mom and my blind 81 FIL (who lives with me) while working full time, being married and have two young kids as a whole, I get dizzy and have to lie down, so I don’t look at it that way. Training your brain takes time, but it’s really the only thing I’ve found that helps me.

43. Maybe you could also couch some of your ideas of help for her in examples of how you or your friends get help. For instance, “having food delivered from the grocery store might be a good idea, My friend Betty does that all the time because she doesn’t want to take the time to go to the store after work.” Or, “I started hiring a house cleaner for my house once a month and it’s been amazing! I think you should do the same thing.” That way she can have excuses that aren’t age and pain related and don’t make her feel more helpless.

44. All very good advice and I read it thoroughly because that is a situation I am going to face one day and it will be much the same. Thank you, Captain!

    One more thing on: “She usually rejects the idea of outside/paid help”

    Your mother is probably experiencing a so-called “secondary gain” of an illness or mishap. She’s in pain, needs help. lost her husband, so now he daughter comes by more often which is something she likes, despite all the grief and bad that’s happening. Everyone is entitled to compassion, hugs, and solace. But when she starts to get used to it and demand it of you it’s time to draw a line, just like the Captain said.

    I suspect she declines help around the house because then YOU have to come more often and clean, so she has you around. A cleaning woman doesn’t commiserate. But that’s selfish. You are not her cleaning woman and once you made it clear that that is not your job, and you are happy to hire one for her, or she can do it yourself, she might relent. If the money is there, then it should be brought to use so you can spend quality time with her, make her feel better, not clean her loo and dust the bookshelves.

    My twocents worth anyway…

    1. I don’t know. My mother (late 60s, widowed, very full life, chronic health issue but not one that limits her mobility in any way) also usually rejects the idea of outside/paid help. But — and especially since I moved back to my home state and am now 60 miles away from her instead of 500 — she also is very compunctious about rejecting, at least on first offer, MY help. (She would rather just “visit” or do fun stuff than have me help her do things around the house. So most of the time the things that 100% absolutely need to get done do, but beyond that, things kinda just sit.) There are a lot of possible other reasons for this kind of thing, many of which are hinted at in comments elsewhere here:

       * She’s embarrassed about a “stranger” being in/seeing her house. My mom, at this stage in her life, has little knack and far less inclination for housework. I would love to get a family friend of ours, who cleaned for my late grandma and aunt, in to help out. But mom would die before letting this person (or anyone besides me) see what her house looks like before being cleaned. So I just have to roll with that; do what I can here and there when I’m home; and accept that our standards aren’t the same and as long as her home isn’t a health risk, it is what it is.
       * She has hired outside/paid help before but got burned. Experience here, too. My mom hired a neighbor’s grandson to do some yard work/clearing fallen branches. He turned out to be a drug addict, left the work undone and tried to hit her up for more money to finish it. Then he stole some of his grandma’s money and took off. Thankfully, a more reliable option has turned up since then, which Mom is slowly starting to make use of.
       * She’s just stubborn, and if you want her to do something she won’t. Sometimes that’s really all it is. We’re human, after all …

45. Thank you so much Captain, and everyone for commenting. This is all really, really helpful. I have a lot of great advice to process but I’m feeling better knowing that I’ll have a few new strategies and scripts to help me along the way.

    A few comments!

    My wonderful spouse urged me a month or two ago to block off “A’s chill time” on my calendar once a week. One evening a week after work is basically dedicated to self-care. It has definitely helped to have that to look forward to (both in regards to my mother and also with my job’s new demands).

    As for scheduling regular visits: we have been bringing over dinner during the week at her house once every 2-3 weeks in addition to some weekend visits. It’s hard to make it a consistant day/time, because our schedules are weird and Mom does have lots of stuff on her calendar (she is great at finding interesting things to get out of the house and do, but actually attending those things really depends on health and energy levels). Phone calls used to be scheduled but that kind of fell off. Maybe I can try to figure something out where (for example) Wednesdays are always Mom days, whether that means a phone call, a text message, a Skype, an email, or a dinner visit, depending on schedules and needs and my own energy. Then at least she’d know that if it’s a Wednesday, she’s gonna hear from me in some way shape or form.

    Helping is a bit more complicated, but I think some of the suggestions are great. I hadn’t considered offering to be in the house the first time someone from the outside comes by… I will definitely make that suggestion and see how she feels about it. Grocery delivery is something I brought up before, but it stresses Mom out to think about setting it up and actually placing the order (technology is difficult for her). I offered the other day that if she wants to just email me a list of things she needs when she needs them, I can place the order for her myself. She was hesitant at first but called back to tell me that she may actually take me up on that some time. I hope she does. I hope I can find more little creative ways like that to help in ways that don’t completely drain me and are ACTUALLY helpful for her.

    The guilt is the hardest thing. I know my mom doesn’t intend for me to feel guilty. She has a lot of FEELINGS and they need to come out, and she doesn’t have many people in her life that she feels like she can really express them to (she does have a therapist, but it doesn’t seem like enough). So I’ll go over and she’ll say “I wish you could come more often” and even though that’s honestly her just expressing her pain and not intending to put demands on me, I immediately jump to “I am the worst daughter ever that I can’t seem to make that happen”. I went to dinner with my cousin (who has been visiting and helping my mom occasionally but will be moving across the country soon) and she told me, “I hear you say that you feel like you’re not doing enough, or that she feels like you aren’t doing enough, but every time we visit you mentioned that you helped your mom with this or that and are planning a visit this weekend or had dinner with her the other day. It sounds like you are doing a lot.” And that was such a relief to hear, because it really does feel like I am up against this idea of daughters dropping everything for their parents. My mom told me that when her father got sick, she took a leave of absence from work. And my first (uncharitable) thought was: Is that what you are expecting of me? Is that what I should be doing? Am I a bad person because the idea of taking a leave of absence from work to help my mom sounds a little like death?

    So I think I really need to work on affirming to myself that it is ok to have boundaries, and that it’s ok to trust that I know where my own limits are, even if those limits are different from someone else’s.

    1. About deliveries: lots of grocery stores a) accept orders over the phone; and b) don’t charge people a fee if they’re over 65.

       Also go you!

    2. It sounds to me like you are a wonderful, caring person who is simply in a really difficult and overwhelming situation. I hope your Team You will remind you of that enough to help it sink in. It’s not your fault your mother has all of these difficult health issues. It is your choice to try to help cope with them. That is something you chose to do for her. If you can’t give as much as she’d like, that’s because the problem is too big, not because you’re not doing enough. The problem here isn’t you – it’s that horrible and difficult things happen to people. Basically, imagine you’re a bit like Superman, flying all over saving as many people as you can, but there are always more people you didn’t have time to save. That doesn’t make Superman a bad superhero. Every positive thing you do is a good thing you have done. They don’t stop counting just because there were other positive things you didn’t do. So, while your mother may continue to be negative at you, you should focus on all of the ways you are caring for both her, yourself, and your own future more than on all of the things you hypothetically could have done. You’ll burn yourself out if you try to do everything or beat yourself up for not doing everything. And this needs to be something that fits with your life, not something that consumes it entirely.

46. This was all so helpful to me, and I’m bookmarking it for the future. My sister-in-law has fibromyalgia and suffers with mental illness, and relies on her father for nearly everything–buying her groceries and putting them away, driving her to multiple doctor appointments every week, keeping her apartment clean. (Note: we have offered to help but he insists on doing it all for now). The time will come that he will be unable to help her, and then her care will fall to my husband and me. I have spent too much time anxiously wondering how on earth we’ll manage. The tips outlined in CA’s response and in the comments will be immensely helpful; thank you all!

47. For the LW and everyone else trying to balance how much help people want / need / might-need-but-won’t ask-for and how much help you can *realistically* provide, Mary Oliver’s Poem “Journey” is my favourite salve for any feelings / jerkbrain thoughts.

    http://peacefulrivers.homestead.com/maryoliver.html#anchor_14788

48. LW, I’m sorry you’re dealing with this, and also watching this thread closely because I feel like this is a window into my future (mom is divorced, highly difficult, has unrealistic expectations of what “help” looks like, but is not yet dealing with the types of age-related health issues that would warrant intervention).

    On a practical note, I worked an outrageous job last year (60+ hour workweeks, and I commuted two hours in each direction to get to/from work), and I’ve compiled a list of all of the things you can automate/have delivered/pay someone to do, because I had no time to do anything at all for myself, so I figured I’d share them here:

    1. Have groceries delivered (already covered).
    2. Hire someone to do the house-cleaning.
    3. Hire someone to do the yard maintenance (if your mom has a yard).
    4. Pay a laundromat to do the laundry (where I live they pick up and deliver, so you can leave a bag of dirty clothes at your front door on Tuesday morning and have a bag of washed, folded clean clothes delivered to you Thursday, for like $0.89/pound).
    5. Put pretty much every bill on automatic withdrawal (with online banking, you can even set up “rules” for irregular bills, like credit cards – I have one card where the rule is “pay the balance, unless the balance is over X amount, then just pay Y amount,” and the bank does it for me automatically every month).
    6. Put any regular income on direct deposit.
    7. For personal maintenance appointments (medical appointments, haircuts, etc.), always schedule your next appointment before you leave your previous one, so you can avoid the “oh no my prescription’s up I have to go to the doctor NOW” situation, or the “it’s been six months since my last haircut and I look like a sheepdog and if I don’t get my hair cut immediately I’m shaving my head” situation.
    8. For medication that’s taken regularly, get a pill organizer – one of those giant monthly ones with the dates marked on the case, so there’s no chance you’ll get confused about whether or not you’ve taken a particular day’s pills. When the prescription comes in the door, put the pills into the organizer immediately. If mom has multiple times of day she’s supposed to take pills, get different organizers for different times of day (the yellow organizer is the morning pills, the blue organizer is the bedtime pills, you get the idea).
    9. If your mom is a reader, see if her local library offers some kind of “books on wheels” program for seniors – my library does this thing where volunteers will pick up/drop off books for senior citizens who are not able to come to the library regularly. (Also find out if there is a senior center near your mom, and see what services they offer – I was surprised at what was available when we were looking into it for my grandfather a few years ago.)
    10. Help mom make a standing “appointment” with one or two of her most reliable friends – having a standing “on the first Tuesday of every month Kate meets me in the diner near my job and we eat dinner” date on my calendar helped me stay connected to a few close friends when I was totally drowning in work and stress, and a similar “someone is coming to meet mom where she is” kind of thing could help your mom feel more socially connected.

    Having the basics set up to run in a way that doesn’t require mom to think about it will likely be immensely helpful to her, and getting these systems set up is basically a one-time time investment that’ll allow you to feel comfortable that your mom’s basic needs are met even on the weeks when you’re too overwhelmed to do them for her. And don’t feel one bit guilty about outsourcing this stuff – the amount you love your mom is not in any way correlated with the amount of housework you do for her, and helping her develop a system that allows her to be more self-sufficient will be a gift to her, whether she sees it that way or not.

    (One more thing – on the medical appointments advocate front, which I saw you mentioned further up the thread, you may want to contact your mom’s local department of social services or similar. I vaguely recall there being social-worker-type people available to help older folks manage medical appointments through my county’s elder services, and having a professional who is specifically trained to be an advocate will serve your mom much better in the long run than you trying to do something that gives you massive anxiety, not the least because it will help you avoid a friction-point in your relationship with each other.)

    1. LW, what is your mother’s relationship with her neighbors? Does she have any? Are they people she has pre-existing relationships with? My grandmother lived 2,000 miles from any family, and as she needed more and more help, we found that we were able to enlist the help of her neighbors, and it didn’t rile up her “super-independent, don’t want outside help” instincts. The family across the street had 4 boys, all of whom at some point or another were paid to take out the trash and do yardwork/maintenance. Phrasing it as “you’re helping them save up for college” went over a lot better than, “you need to hire a person to do X thing that you can’t do on your own.” The next door neighbors were both nurses, and once a week they would bring their adorable little daughter over and be neighborly while asking Polite Neighborly Questions (and checking to see if she seemed to be in good health.) Another neighbor went to the same church, and offered to drive Nana because “it would be silly to take 2 cars, after all, the parking lot is so small.”

       If you can find a few people who your mother already likes and trusts, each of whom have The One Thing that they do for her every week/month, it can add up to a lot of things being taken off your plate.

    2. Oh also! Amazon does automated deliveries – this is great for dry-good-type things like coffee, paper towels, TP, etc., where you’re basically using a set amount of the thing on a regular basis and can guesstimate with a decent amount of accuracy how much you’ll need and how often you’ll need it.

49. Atheists do have a fake church! It’s the Unitarian Universalist church, and while it’s not atheist-only, there are many atheists who are full members and church leaders and do all the church stuff! My atheist mother-in-law was a member of her congregation for years, and my atheist husband and my atheist self were married there. I attended a local congregation for a while, and it seemed like all the good stuff about Christian-style churches with little of the bad. Here, linky:

    http://www.uua.org/

    Also, not for nothing, but just because a family member isn’t a member of a particular religion doesn’t mean that religious groups local to them won’t be willing to help out. My aunt and uncle were camping far from home once when my uncle had a heart attack and had to be hospitalized. My aunt didn’t know anyone within hundreds of miles, and they were not prepared for the expense of a hotel stay for her. My other uncle, her brother and a member of the Mormon church, made some calls, and pretty soon, the local church was on the case with logistical, financial, and emotional help and support–even though neither of them was a member. They were a big help during a difficult time. It might be worthwhile to reach out to like-minded locals.

    1. Oh, just wanted to add that by calling the Unitarian Universalists a “fake church,” I’m not trying to run them down at all. They do good work and are lovely, caring people, who live by deep moral principles. If anything, I mean it as a compliment: they are spiritual without being dogmatic, and really do try to realize the best of church-style traditions but leave the dogmatism behind. Also, they seem to collectively have a sense of humor about being a bit of a touchy-feely unChurch, and I appreciate that. So. There you go.

    2. UUs are lovely people but they’re not right for all atheists. I went to a service and it was nice, but they were still way too… religious for me. So YMMV.

       There are secular humanist organizations and similar un-churches and atheist support groups springing up (slowly), so if the LW or anyone else is looking for non-faith-based community help, there may be more options depending on where they are. There’s also Grief Beyond Belief for atheist support through the death of a family member.

       1. I’ve heard UU churches can vary a lot. Some of them are basically humanist organizations and atheists find them to be very welcoming; some are much more like non-denominational-Christian churches and atheists feel entirely out of place. YMMV, and that depends both what you’re looking for and what your local UU is like.

50. I just sent this link to my husband. He is dealing with two live parents with medical issues. Just found out his dad has cancer and needs surgery in two weeks. Five weeks ago, 250-lb drunk dad fell on 110-lb drunk mom and broke her knee. She has been either in the hospital or the rehab center since.

    My husband has been trying for years to get his parents to consider in-home care or moving to a retirement community, but that have refused. His dad even said once, when my husband asked what their long-term plans were, that he expected my husband to visit (1,000 miles from us) frequently to take care of things.

    In addition to the usual guilt children feel about their parents, my husband’s situation is complicated by the fact that his parents are (mean) alcoholics. I don’t know how he can deal with them, but your response is a great start.

51. I can recommend the ‘Let’s try it for a month’ plan.

    ‘You could get a cleaner’ becomes ‘How about trying a cleaner for a month? If you don’t like it after that, then we’ll cancel it.’ Change is scary, especially in a situation where there’s a major loss of control. Defining the change as a possibly temporary thing with a fixed duration makes it less scary. And a month is long enough that the change starts to become the new normal, with its benefits experienced, and its drawbacks very probably not as bad as imagined..

52. I’ve been through a similar situation recently with my Gran after her husband died and I can second the Captain’s advice. My Gran wanted something that wasn’t possible – for her son (my dad) to move in with her and care for her – but was afraid of asking him directly and being rejected so instead tried to make it happen by refusing help or support from all other sources, pushing her friends away, telling him lots of stories about her memories of the good old days when families supported each other properly etc.
    What worked for my Gran and my Dad was:
    1) Being really open and honest about what was and wasn’t possible. “Mum, you need to know that when you’re feeling frightened or upset, I can’t drive for 3 hours to come and fetch you.”
    2) Finding ways for her to accept help without ‘losing face’ – for example she insists that she doesn’t actually NEED carers to visit her twice a day, but puts up with it because her son would worry about her if she didn’t ‘let’ them visit. Everyone, including her, knows this isn’t true but we’re happy to go along with it.
    3) Being willing to take the odd insult without taking it too seriously or arguing about who is right. “Yes mum, you’re right, I’m a horrible son who doesn’t care. Luckily your carers do care so maybe they can empty your bins for you tomorrow.”
    4) Everything the Captain said about routines and self-care.

    It’s possible you’ll have to accept that whatever you do will not be good enough. This wasn’t the case with my Gran, but with a friend recently in a similar situation I think it helped her to realise that even if she did give up her whole life and become a full time carer for her mum, her mum would still never be happy or feel that her daughter was giving her enough. That realisation enabled her to focus on doing what she COULD do to the best of her ability.

    All of the above took several months and repeated boundary setting was needed, but in the long term it enabled the whole family to move to a better place. Good luck!

53. I am grateful for everyone sharing their experiences and advice; I can imagine a time when it will be useful.

    I keep thinking about the guilt thing, and how it wraps up with loneliness and grief and so on. After my ggpa died, we would often have this convo with my ggma:
    “I am so lonely, you NEVER come and visit me!”
    “But Ggma, we literally ARE visiting you, RIGHT NOW!”
    Sniffle, harumpf.

    adksljfgh

    I don’t know, y’all. The only thing that helped in my case was trying to get back to the present moment in the conversation, and also reminding myself that I *did* see her usually at least once a week, which, y’know, is greater than never. But that kind of loneliness has to suck, and I can understand why folks might not be super rational about how they express those feelings. Anyway, I just had to step back and not let myself believe the exaggeration, but instead try to feel (and address) the motivation, and temper my guilt (if I was going to have any) so that it would be in step with reality, not the imagined problem.

54. I’ve only read the comments quickly, so I apologize if someone else said this already, but in case no one else has I think it is important: you do not necessarily have to do this at all. Not because she’s your mother, not because you’re her daughter, not because you’re an only child, none of that. This responsibility does not automatically fall on you, as much as society would like to tell you it does. You are entitled to opt out of this. That can mean setting it up so that others handle all the work, or it can mean moving across the country. That sounds heartless, but in case ‘controlling’ is actually code for ‘abusive’ (and it would be with my own mother), just know you are not obligated. And even if it isn’t, you are entitled to live your own life if being a caretaker (of any degree) is simply too much for you. I just want to make sure that has been said ‘out loud’ as it were.

    1. That said, sadly, the rest of the universe is also not obligated to do it.

       Boundaries are good! Boundaries are great. But when it comes to elderly parents, however tricky they may be, there comes a time when boundaries have to be balanced against the fact that failing to provide (by some means, and yes, setting up other arrangements definitely counts) assistance to people who cannot live independently and have nobody else to care for them means that they are going to suffer, mentally, emotionally, and physically.

       I’m aware that there are lots of mean, abusive, or just plain unpleasant parents out there. I’m also aware that elder neglect and abuse, especially of seniors with physical handicaps or mood disorders or dementia or substance abuse problems, is incredibly common.

       It’s a problem, and it’s more complicated than ‘you don’t have to do it’.

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